Definitely Not Just a River in Egypt

A few months ago, I went to a new dentist. During the intake, the hygienist asked me if I had any health problems. I thought about this for a split second longer than probably seemed necessary before answering, as casually as possible, “No.”

No. A simple, one word answer that couldn’t have been more ridiculous if my nose had grown ten inches while I was uttering it. After more than 20 years, you’d think I would have gotten the hang of this by now, but the truth is I don’t know how to tell people the truth about my health. I have pain and tiredness that interfere with every aspect of my life and yet, because I often feel the person I am speaking to will not understand, will not believe me, will blow off the statement, “I have Chronic Fatigue Syndrome,” as something unimportant, if not deceitful or indicative of a weak will and/or laziness, I avoid talking about it. Until recently, I have felt that many people in my life look at me and think, as Cher so eloquently put it in the movie Moonstruck, “Snap out of it!” And the bigger problem is that, a lot of times, I have felt the same way.

It’s amazing to realize, after all these years, I am still in a denial. To quote a wonderful sketch written by Garrison Keillor, “This is not happening. I am not here and this is not happening to me.” Crazy. Unbelievable. But because my super-duper logic-loaded brain can’t come to terms with an effect that has no apparent cause, I have spent most of my moments—even those substantially painful ones—believing that this is all a mistake.

Said mistake is two-pronged. One: because no one has ever been able to find a whole heck of a lot wrong with me diagnostically, I tend to believe more in the tests than in my own experience. And two: yeah, I really don’t want this to be my life and, maybe, if I don’t accept it, it will go away.

But I couldn’t help realizing the ludicrousness of my behavior at the dentist. I desire authenticity from others and myself. I hate lies and fakeness above just about everything else. And here I was lying and being fake.

I did it because it is so scary to be honest and vulnerable, to allow others to have their own thoughts and feelings about me that I can’t control (as if I could do that anyway!) I think most of us have the illusion that if we act a certain way, achieve certain things, we can get people to view us in a positive light. We can get the smiles and kudos we all crave. While this is true to some degree, we can’t actually control how others feel about us and we risk a lot by attempting to win approval through less than authentic means. For one thing, the chance to connect with others on a deeper, more enriching level. What if the hygienist had all the compassion in the world for me? What if she did understand? What if someone important to her has CFS and my revealing that I was sick somehow helped her cope with that? Recently, someone close to me brought me to tears by telling me that she had never thought I had been lazy or malingering, that she felt sadness at my struggles and defensiveness toward those who thought the worst. I shudder to think how much I have let my fear of her disapproval come between us.

Yes, there have been and will continue to be people who don’t get it and are hurtful as a result, but the bigger problem with denying my situation is this: what does it do to my relationship with myself? What else in me—how much of the good—have I denied in the process of pushing this “other” away?

So lately, I’ve been working on embracing CFS. What does that look like? Not being ashamed. Not hiding. Not lying to people just to save my ego some cringes. It means, instead of thinking things should be different and figuring out whose fault this all is (usually mine), believing in my experience from moment to moment, staying present with it, and no longer defending myself from reality.

5 thoughts on “Definitely Not Just a River in Egypt”

Too often I answer people the same way as you did figuring that if they don’t really need to know there’s no point wasting energy trying to explain it. I always feel ashamed afterwards though thinking maybe they wouldn’t have dismissed it like I expect them too and I might have been able to educate someone and make it easier on the next sufferer they meet. Like you I’m trying to be more honest with people, not be ashamed to admit to my illness and not let it stress me if someone is dismissive when I tell them what’s wrong with me.

Hello and welcome! I am a writer, harpist/singer, artist, and crafter living with chronic illness. My goal is to live joyfully and wholeheartedly through compassion, mindfulness, and creativity. I hope you find something in these pages that adds a little light to your day. :)

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